No, sir, away! A papaya war is on!

disability

It’s time for Cee’s Share Your World again! With luck, I’ll be able to keep up with this challenge each Monday even in the busy upcoming months.

You’re given $500,000 dollars tax free (any currency), what do you spend it on?

Let’s say, just for fun, that I’m not allowed to save any of it.

I’d split the first $100k between my family and friends who need it most. Another $100k goes to home care and pet care — look at that sweetie to your left and tell me he doesn’t deserve a shiny new dog bed. For my part, I want a couple new cat trees and a ridiculous glitter floor.

The next $100k goes to my partner, partly to spend on the students at the special needs school where they work. Hopefully there’ll be enough to take a few kids (plus their parents and caretakers) on a vacation they’d otherwise never get to experience.

I’ll keep $100k for traveling, new clothes, a new computer, and a couple of tattoos. With the last $100k, I’d start a charity to support creativity in local communities. There are so many stories out there waiting to be told through art, so many voices that go unheard, and I have to admit, I constantly daydream about being able to help lift them up and show them to the world.

What’s the finest education?

I wish we were taught compassion in school. Right now, it’s something you learn only through life experience — through hurting others, or getting hurt. It wouldn’t translate perfectly to the classroom, but I can’t envision anything negative coming from education on accepting and understanding others’ perspectives and ways of life.

What kind of art is your favorite? Why?

All art is beautiful, but writing is my favorite. As an anxious child, I liked that you could follow a set of rules to produce competent writing. As I grew older, it helped that I could write without any special materials — I still remember how much the supplies for my painting classes cost. Writing just meshes with me in a way other art forms don’t, even with practice.

Is there something that you memorized long ago and still remember?

In my freshman year of high school, I played a fairy in our production of A Midsummer Night’s Dream. But I had a crush on the boy who played Lysander, and when I heard that the girl cast as Hermia was going through a family emergency, I memorized her lines overnight.

I became her understudy and stood in for her during almost every rehearsal. I’m still in awe of how quickly I managed to learn the part. Hermia’s actress showed up late to opening night. The director had a split second to decide whether she’d wait or send me in. She chose to wait.

I never did get my moment in the spotlight (or get to date Lysander), but I remember every line.

Take comfort: he no more shall see my face;
Lysander and myself will fly this place.…

One of those anecdotes my family loves to repeat: When I was first learning to walk, I wouldn’t make a sound if I fell down and hurt myself. Instead, I’d sit there on my diapered rear, looking solemn. So, one day, my grandma came up to me and said, “Honey, it’s okay to cry.”

I punched her in the face.

Later on in life I ran across a few situations that probably merited tears, but I never could figure out how to cry. (And, as I learned firsthand, there comes an age when it isn’t cute to express your emotions through whacking people anymore.) I cried over high school crushes, but for the most part, anything more intense would make me clam up.

I remember sitting through tearjerkers like Up and Big Fish while my friends or family wept around me. There were plenty of jokes about how I was heartless, or they were too emotional. I wasn’t an easy scare either, when it came to horror movies. If you’re the kind of person who believes in gender stereotypes, you’d call me the man in every relationship I’ve had: I kill the bugs, I let my lover hold my hand in scary movies (and when they have nightmares after), and I don’t show my feelings.

The thing is, I wasn’t feeling my feelings either, and I wanted to. Crying, or at least sitting with your sadness for a while, is cathartic. You do it, and you move on. There was plenty I wanted to move on from. For a while, I sought out the saddest movies and songs I could. I’d sit in front of Youtube and watch these recordings of sobbing people having their pets euthanized. Nothing.

Then I saw a horror movie alone, and I caught myself off guard by bursting into helpless, noisy tears.

I think it was The Last Exorcism. Later on, when I went to see sequel in theaters, I cried too. (No, not because of how awful it was.) For a few years, I went by myself to see every horror movie the week it released: Chernobyl Diaries, Paranormal Activity 4, Sinister, The Possession, The Woman in Black. Some were good, or at least fun to watch. Others were terrible, but inevitably, I left the theater sniffling and all wrung out.

And it felt great. It felt like I was finally getting somewhere in life. I just couldn’t help wondering what the hell it was all supposed to mean. The movies that hit hardest tended to feature young girls as the subject of a ritual or a possession, which didn’t frighten me and certainly hadn’t happened to me.

…Unless, in a way, I actually had been through something similar.

I remembered how my ex, the one who hit me, used to be terrified of the woman from The Grudge. He said that for a long time after he first saw the movie, he’d sit awake at night, staring at the corners and waiting for a wispy dark cloud of her hair to appear. Which he thought was strange, because usually, he was most attracted to girls who looked like her — and like me — with long dark hair and pale skin. He was so terrified that if my hair fell over my face or I got too quiet, he’d yell at me.

I told him, “Maybe it’s because you’re afraid of what you love most turning on you.”

From where I am today, this sounds silly, but his fear gave me power. He could hurt me, he could manipulate me, he could shout at me, but he was also afraid of me. Afraid that the weak, intimidated person he knew might be taken over by something stronger. I don’t think he feared the supernatural so much as he feared me snapping out of it and finding a way to get back at him.

Movies that center on exorcism still scare us today, although the historical events that inspire them are often a case of misinterpreting disability. Some even take comfort in reclaiming exorcism as a way to handle their illnesses.

I can relate. The girls who star in these movies are innocent in a way I never got to be. The ghosts or demons that haunt them also give them the ability to hurt and terrorize — without being fully themselves, without marring their innocence.

I spent my childhood at the mercy of illness, feared for what it might do to me. I spent my early adulthood at the mercy of a man, feared for what I might do to him. I had power over others that came at a great expense to me. I was scared to show my feelings to anyone who asked, because I knew that an honest answer would make them scared, too. Or angry, or sad. Sometimes this felt good; it gave me a secret advantage. Usually, though, it just made me feel beyond helping.

These movies reflected my experience in a way real life never could. The protagonists don’t mean to cause any trouble. Some of them fight against the entity that seeks to take them. Some of them embrace it. Either way, they don’t come out the other side unscathed, and no one will ever look at them in quite the same way.

I cried because a handful of scriptwriters out there accidentally managed to understand me. They stuck up for me. They made me sympathetic.

These days, there’s less of a disconnect between me and my feelings. I still love horror, and I’m still not a big crier, but I no longer need to see pretty little girls in white dresses be tortured and turned into monsters before I’m able to feel something for myself. I’ve gotten better at processing my experiences, and I think I’ve finally cried myself out.

And I still don’t like it when people fawn over me and ask me if I’m feeling okay, but I can usually brush them off or tell them the truth, which is a big step up from smashing them right in the nose.

If you went back in time fifteen years and told me I’d end up swallowing pills daily as an adult, I might have just offed myself on the spot, no kidding.

At age nine I was diagnosed with a chronic autoimmune condition. My mom was terrified for her baby (understandably, considering the mortality rate), but as far as I knew, the bad part was taking the medicine.

I never could take pills as a kid. They’d get stuck going down, or I’d throw them back up. So I ended up spending a few years swallowing liquid steroids, mixed in with chocolate syrup. And while I didn’t mention this in my post on hoarding, I eventually got fed up with the taste enough to start peeling back a corner of my bedroom carpet and dumping my daily dose there.

After that, I called it quits on medication. I wouldn’t even take an Advil unless I was in too much pain to function. And I stayed that way, until early this year, when I managed to render myself regularly nonfunctional.

I thought I was taking a positive step when I started therapy, and I guess I was, but it also kicked off a serious months-long drinking habit. Despite all those stirred-up memories, alcohol kept me calm and focused, as long as I started drinking early. It also gave me miserable headaches every single afternoon. Between learning to swallow pills and cutting back on drinking, I chose the pills.

Long story short, a few months later I found myself sitting in a doctor’s office with this weird, throbbing pain in my side, half-convinced that I’ve given myself pancreatitis. He told me I didn’t, but he did say I should quit it with the daily alcohol just in case. (He never did figure out what was up with me, but it went away.)

I happened to mention to him that I felt like I had to drink in order to stay focused and accomplish anything, and he said, “Oh. You have ADD.”

It was as simple as that. I left his office with a prescription for my little blue pills. I’ve taken them for not quite thirty days now, and I can’t imagine how I got through life before this.

Reading through a list of symptoms is like going down a checklist of my flaws: forgetfulness, trouble meeting deadlines, excessive dreaming, inability to honor commitments, chronic lateness, procrastination, anger. That’s all gone from my life now. I keep looking over my past in total awe that I’ve spent my whole life beating myself up over a chemical imbalance that isn’t my fault.

It’s not all sunshine and roses. If I overestimate what I can do in a day, I get anxious and irritable, because in the past I’ve faced such harsh consequences for failing to follow through. I spent much of my first medicated week glued to the computer, in shock that I was finally able to set and achieve goals in my favorite video games, the way other players always did. I’m starting from scratch when it comes to organizational skills, and it shows.

Still. I’ve cleaned my house and kept it that way. I’ve written thousands of words of fiction and made important progress on the work I hope to publish. I’ve begun to learn how to network with authors online, and I’ve made a few friends in the process. I no longer shy away from phone calls or family events. I was accepted into a volunteer program and have poured hours of work into it already. This is my ninth blog post in twenty days, and on top of it all, I’ve made more progress in my video games than I would have during any other month.

I never fully realized how much my prescription does for me until I skipped a few days. I started off feeling confident, but I found that I could barely drag myself out of bed, even with an alarm. Nothing motivated me but food, and I wanted to binge eat so badly that there was no way for me to feel satisfied with healthy choices. The simplest tasks, like brushing my teeth or scooping the cat litter, seemed insurmountable.

That’s what every day looked like for me, for about twenty-six and a half years. Once, before I knew there was a name for the problems with my brain, I tried to explain them to my partner by saying I could not choose to get things done. I could do something because I’d been drinking, or I’d rewarded myself with food, or I was afraid of the consequences. I was not able to just decide to do something — even something fun, like going shopping or playing a game — and then do it. Instead, I’d go on desperate get-your-shit-together kicks once or twice a year, fueled mostly by shame, and I’d burn out.

I’m afraid of becoming dependent on these pills. What if one day I can’t access them? What if I adjust to the dose?

But I read somewhere not long ago that what ADD medication does for you is fix the broken pathway between making an accomplishment and feeling proud. I can’t cite a source here, but I know that for the first time in my life, I can value myself for the hard work I’ve done, even though I know lots of others out there do more and better than me. I feel happy when I reach a goal, instead of just feeling deprived of all the time I spent working.

Pills are still tough to swallow in more ways than one, but for a shot at an actual fulfilling life, I’ll take my risks.

My earliest memory is from when we were rich. I’m a toddler looking up in wonder at sky-high shelves piled with plush animals, pink Barbie furniture, Disney princess faces.

I think: if all that fell down on me, I’d drown.

I remember tiptoeing barefooted through the corridor in my grandparents’ house, shoulders narrowed, shying away from spiders suspended over the unpacked boxes that line the hall. At the end, I find my grandma using her kitchen shears to clip a red cardboard heart from an empty spaghetti box. She extends the heart to me; a gift. “It made me think of you.”

One night, after I’ve learned at school about stop drop and roll, I decide that I should keep my favorite things in one basket, so I can find them all fast in case of fire. As I hold up each toy and try to judge who makes the cut, it occurs to me that I can’t sleep in bed with any of them this way. I give up and lie in bed awake, trying not to think of flames.

Before we move, my mom asks me to sort through my toys and choose some to give away. This won’t be hard, I decide. I’m growing up, and I don’t play with lots anymore. Other, littler kids can love my old friends better. I toss aside a big bristly teddy I’ve never looked at twice. My mom picks him up and tells me about the distant aunt who gave him to me, about how excited and bursting with love she was when she heard I’d soon be born. When my mom walks away, I sheepishly move the teddy into the pile of toys to keep.

In the new house, I can’t explain why I now find myself tucking trash behind my mattress, in my nightstand. At school, after lunch, I throw scraps out in pairs so they won’t get lonely. My mom packs me juice in a flavor I don’t like, and though I try to push it on my friends, no one wants it. I cry when I throw it away, because the words little hug are written on the bottle. I just don’t want to hurt anyone.

My new dad comes out of my bedroom and looks at me. He says to my mom, “There’s something disgusting in the drawer. Tell her to clean it up.” I think about how he used to bring me gifts, and how maybe now he doesn’t because he knows I don’t take care of my things. I go in, heart pounding, and look in the drawer. He’s right. Why had I left it there?

I get older. I tie a too-small belt around my waist and tighten it. I tell myself I can only take it off when I’ve cleaned up my room. I buy a pack of razor blades and cut myself once for every thirty minutes I put off cleaning or homework. Carelessly, I drop a blade in my blanket and put my knee down on it. In the middle of the night, I wake my parents to tell them I think I need stitches. The next day, all the blades and scissors and safety razors are gone from my room, and mostly, I’m mad that someone went through my stuff without permission.

I am in my college apartment, where I live with my boyfriend. The sink overflows with dishes, the stove is coated in baked-on slime, and the fridge festers with mold. The carpet is gritty, and the bathroom has never been scrubbed. The closet is stacked waist-high with junk, his and mine, intertwined. He slams me against the wall in time with his words. I can hear the punctuation. “You. Lazy. Filthy. Whore.”

Outwardly, I cry and apologize. Inwardly, I agree.

After I leave him, my next partner has a calm talk with me in the car, about whether I can keep up with cleaning the cat box. I punch my thighs and slam myself into the door. I had one shot at starting over, and I fucked it up again.

I see a therapist. I tell her, “I think I’m a hoarder.”

“Hoarder?” She makes a face like she doesn’t believe me.

I recount to her the story of my grandma and the heart on the spaghetti box. I think how I might still have it somewhere. I tell her I’m not that bad anymore, but it’s still a struggle. I’ve never neglected my own pets, but before I throw out boxes from cat litter, food, flea meds, I kiss the cats printed on them goodbye.

She says my grandma may have taught me some bad habits, but she also taught me about love. I can’t bring myself to disagree.

I have my first panic attack, then my second, then third. The smoke detector goes off when the oven gets too hot, and I tremble for the rest of the day. The smoke detector runs out of batteries, and I keep snapping awake during the night, heart racing, sure I’ve heard the hiss of something, somewhere, going up in flames. I begin to wonder if it wouldn’t be easier to get the fire over with. I could start over one last time, in a new place. I know I’m just lazy. I could pull through; I could keep it clean.

I begin to drink every morning. It keeps me calm, and it helps me focus. After a few shots, I can clean a room without stopping. I don’t get distracted and end up across the house, in front of the computer, with a dirty dish still in my hand.

I see a doctor and I tell him this. I leave with a prescription, and I take my dose the next morning. I scoop the litter, do the dishes, scrub the kitchen counter. I mop the floors. I pull everything out of each closet and cabinet and rearrange it in ways that make sense. I put out the decorative baskets and pictures I bought after moving in, back when I was sure I’d finally buckle down and keep a place clean. I still have too many stuffed animals, but I put them neatly away. For the first time since childhood, I hang up my clothes.

Days later, it still works. Once I decide to get something done, I’m suddenly capable of doing it. I think, “I’m going to hang up my dress”, and I do. I see crumbs on the floor and it’s no big deal to wipe them up. I stroll through my clean house, fantasizing about telling my parents. I won’t, though. I don’t trust these pills long-term.

After a while, an uncomfortable feeling settles into my bones. I can’t find anything to put off, or to beat myself up about.

I open the linen closet. Here, I keep boxes of memories, holdovers from the early days that haven’t been lost or thrown out in fits of self-hatred or rage. There are more of these at my parents’ house. I know I have to deal with them eventually.

I choose a box and I rifle through it. I try to muster up the urge to handle it like I’ve handled every other cluttered corner of this house, and I’m surprised by how easy it’d be to sever my attachment to some of the stuff. There are little kids’ building blocks and decks of cards and sheets of yellowed stickers that I don’t even remember owning. This is how I’ve handled my hoard over the years: I get angry enough to discard it, or I put it away until I can pretend not to care.

At the bottom, I find something. It’s a yellow plush star with a smile face and ragged blue fabric stuck to the back. I remember clipping it off a pair of slippers I’d gotten for my birthday when I was nine, the same year I got caught with something disgusting in my drawer. I remember how I had begged not to be given toys anymore, so I wouldn’t feel obligated to hold onto them for my whole life. I remember trudging around in the slippers, loving them, fearing the day I’d wear them to tatters and have to throw them away.

I remember how a smiling moon once shone up from the toe of the other foot, opposite the star. I look through the box, and I can’t find it. I picture it buried in the dump, with insects nesting on its happy cloth face. I picture it falling into an incinerator.

I put the box away, but I keep the star out. I hold the stupid dirty thing to my chest, and I cry.

Hoarding disorder is a serious condition marked by excessive attachment to objects and/or animals. In my experience, it can be exacerbated by additional illnesses such as depression or ADHD. If you or someone you love may have a hoarding problem but can’t access medical or mental health services, you can start where I did and find support at Squalor Survivors and Stepping Out of Squalor.

I’m ten years old. I’m walking through the mall with my grandma. A lady stops us, flashes me an eager smile, and tells me that I’m ugly, but I have a kind soul.

She doesn’t come right out and put it in those words, you’re ugly. Instead, she says something like despite how you may look on the outside, but I’m not dumb. I know what she means.

She goes on chattering, waving her hands around, talking about the light shining from within me. My grandma is nodding politely along with her, indulging her, so I do the same. I know this stranger thinks she has paid me a compliment, but I can’t bring myself to take it that way.

I am ten years old. I still want to grow up to be a princess. Beauty is important to me. Even in the books I love to read, the Animorphs series and the Baby-Sitters Club, the protagonists are plain and unstylish at worst. I am fatter than the girl in Blubber. I’ve checked.

I would like to be plain. I would like to not be fat, I would like to not have a disability that contributes to my fatness. Every night I fall asleep praying that I will wake up living in some other, better body in some other, better world. I try my hardest not to picture a future where I will never be lovely and thin, but here in front of me is this stranger telling me that I’m doomed.

But it’s supposed to be okay, because I have a kind soul. (What ten year old cares about kind souls!?)

After a while, my grandma drags me away from the stranger’s side. She gives a poised, neutral nod and says, “Wasn’t that nice of her to say?”

I shrug. I go to the food court, and out of anxiety and shame, I order one kids’ meal and one adult meal and ask the cashier to hide them in the same bag.This isn’t the first time I’ve doubled up on food and it won’t be the last, although in another year, I’ll decide to take the matter of my body into my own hands, and I’ll stop eating all meals but dinner.

And in three years, when I’m finally approaching thinness, I’ll be at the butt end of another backhanded compliment here at the mall when a car packed with teenage boys passes me, all of them hanging out the windows and howling at me at the top of their lungs. That’s when I’ll discover that there’s no winning, there’s no correct body to have. I’ll wilt a little inside as my grandma attempts to handle the situation with the same adamant grace: “My, they certainly did like you, didn’t they?”

I try not to let this stuff stick with me, but it does, even now that I’m an adult who just isn’t interested in the pretty princess life anymore.

The stranger could have chosen to act like my favorite teacher, who encouraged me to be talkative and creative. I still remember how reacted when I turned up to talent show rehearsals in glittery silver sandals. He said, “Now that’s a pair of stage shoes if I ever saw one!”

The stranger could have chosen to act like the nicest nurse at the children’s hospital where I got my monthly checkups. When I had to have blood drawn, she held my hand and told me it was okay to feel afraid. Unlike so many others, she saw past my weight and height and treated me like the scared child I was.

The stranger could have chosen to act like my physical therapist, who complimented my determination, motivation, and accomplishments. Even though it was part of his job to help me stay in shape, he never commented either positively or negatively on my body.

But instead, the stranger chose to underline my appearance, as if my other good qualities were only useful as a way to make up for how I looked. I’m sure it was an honest mistake on her part, but I felt like someone had pulled a mask off my face and gasped in horror at what they saw.

Sixteen years down the road, I’m more comfortable in my own skin. I can take a compliment without turning it over and over in my mind, looking for the dirty side. I can brush off strangers the way my grandma once did, can look down my nose at them even from five feet tall.

That ten year old, though? She isn’t gone. Her legs still tremble in fear when strangers approaches her. She still tries to reach for food neither of us really want to eat, and she still looks in the mirror and sees herself fat, frizzy-headed, big-nosed, and unacceptable.

This isn’t the fault of a single stranger, by any stretch. I don’t blame her. But I do wish that instead of adding to the chorus of negative voices, she’d have been one of the few people who helped teach me how to take care of a frightened inner child who can’t calm down and won’t go away.

Me

I write character-driven epic fantasy set in an inclusive, intersectional world. My current project is a final draft of the first in a five book series. I daydream way too much about someday having a fandom.
In my free time I eat up scary novels and movies, or I play horror and fantasy video games. In theory I blog about this stuff, but mostly I complain and post pictures of my (six!?) cats.
I'm exceedingly fond of palindromes. Not a banana baton.